Working conditions, population shifts make good personal assistants hard to find — and keep
Wanted: Entry-level Taco Bell “crew worker.” Candidate must be able to perform one or more repetitious tasks in a highly standardized manner and operate automatic machinery. Pay: “competitive” wage with the possibility of raises. Immediate access to basic benefits package. Generous 401K match. Opportunities for training and career advancement.
Wanted: Personal care assistant (PCA) to help adult with neuromuscular disease manage activities of daily living. Candidate must be capable of heavy lifting, extremely reliable, able to follow complex instructions, comfortable helping with intimate personal tasks, skilled at minor medical care and clear-thinking in an emergency. Prefer flexible, friendly personality, nonsmoker, no drugs. Part-time; hours may vary month to month. Pay: minimum wage. No raises, benefits or paid sick/vacation days.
From a purely monetary perspective, it’s hard to see why someone would choose to become a personal care assistant.
Luckily, there are other attractions to the job, such as flexible and part-time hours, working with people and getting a chance to have a meaningful impact on someone’s life.
“This is people’s passion, to care for and serve other individuals,” says Karin Stockwell, senior director at Dungarvin Minnesota, a large caregiver provider agency.
Without personal assistants, living at home and leading an independent, community life would be a pipe dream for many individuals with disabilities. PCAs also supplement families’ care, enabling loved ones to stay at home rather than going to nursing homes.
The burning question is: Will there be enough PCAs to meet the growing need for services in the coming years?
The stark answer is no. There aren’t enough now. Part of the challenge is discovering how people who rely on these services — the consumers — can improve the situation.
Into the gap
“I call this the perfect storm,” says Renee Pietrangelo, CEO of the American Network of Community Options and Resources based in Alexandria, Va. ANCOR is a national network of agencies that provide PCAs, or “direct support professionals,” to people with disabilities.
“Historically we have never had so many different confluences coming together at the same time. We’re in a crisis now and the gap starts opening up in 2009.”
“The gap” is the difference between the number of PCAs needed and the number available; by the year 2010 more than 780,000 additional workers must be found to staff long-term care positions. The “confluences” are the simultaneous factors wedging open this gap:
Consequences of the gap
“This is one industry you can’t outsource to other countries,” Stockwell wryly notes.
From the hassles of finding and training new people, to the exhausting overload put on family caregivers due to the lack of help, to the dangers of being left unassisted because a PCA cancelled and no emergency backup could be found, the daily effects of the PCA shortage are everywhere.
Therese Nadeau, 36, has spinal muscular atrophy and is “100 percent reliant” on PCA support. A program specialist for the Community-Integrated Services and Supports Grant (C-PASS) at the University of Connecticut Center on Disabilities in Farmington, Nadeau has written a curriculum with other employers to help Connecticut consumers become better managers of their personal assistants, with the goal of boosting recruitment and retention.
Even with this advantage, Nadeau still experiences occasional PCA shortages.
“It’s so difficult to keep my regular schedule when I have to schedule day-to-day with personal assistants,” she says. “It really turns my life around. Fortunately I have family and friends who can help fill in but that can be really stressful.”
The consequences go beyond stress. A recent study of women who rely on PCAs for independence and community living found they experienced high levels of various forms of abuse, from both paid and unpaid caregivers, in both consumer- and agency-directed care. Study participants identified the greatest barriers to preventing or managing this abuse as “low wages, manpower shortages and lack of backup providers” — in other words, they put up with it because they can’t get anyone else.
What do PCAs want?
“People think it’s only about wages,” observes Pietrangelo. “Well, wages draw people into the field, but it’s other things that make them want to stay.”
Of course higher wages and affordable benefits are essential components of any large-scale solution to the shortage. But PCAs also are more likely to stay in jobs offering professional working conditions, like training and continuing education, supportive and culturally sensitive supervision (PCAs come from diverse cultural, ethnic and linguistic backgrounds), and a sense of being a valued employee, says Pietrangelo.
A patient, understanding consumer also makes a difference. Sometimes PCAs become the target of a consumer’s frustrations or family members’ hypercriticism. Sometimes consumers act as if PCAs are mind readers.
“With the high turnover, people get frustrated telling the new guy again how to do something,” says Stockwell. “But it can be scary to work with someone for the first time and do intimate care. It can be tough for the person having it done and tough for the person doing it.”
What can consumers do?
Advocates urge becoming educated about the issues and sharing your views with your federal and state legislators and local press. Strategies for dealing with the shortage include:
“Consumers, parents and friends can make others aware of the value of this work, the fact that it’s complex and challenging.
“Wouldn’t it be nice if our heroes were people who dedicate themselves to supporting other people?” she asks.
“It’s teachable. Through education, you can shape a generation that really appreciates and values this kind of work."